Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

Pages

Tuesday, November 25, 2014

God Moments in WI

Sometimes God just amazes me. Maybe that should be more often, but there are just sometimes where I am left in awe of how God orchestrates things that we never could have seen coming.

My parents and I are currently driving back home after my neurology appointment in WI. This appointment was so different than we had anticipated, and it was totally a God thing.

First, I was never supposed to see the doctor that I did. Back in July I had met Dr. Chelimsky at a conference and he encouraged me to send my records to his office and see if I could get an appointment to see him. I went through all the effort of collecting referrals and my records only to be told he was no longer accepting new patients but I could see one of his colleagues. I made the appointment but with the intention of cancelling later because I really wasn't interested in seeing a doctor I knew nothing about. About 2 months after the appointment was made, I received a call from the neuroscience clinic in WI saying the doctor I had been schedule to see was going to be out of the office that day and they were going to put me on a wait list for any cancellations. I told them I was not local and would not be able to come in on short notice. They came back and said I could keep the appointment but would have to see a different doctor...guess who that ended up being...Dr. Chelimsky! So we felt like we should keep the appointment because it just seemed so weird that things worked out for me to actually be able to see him. We really felt like maybe God had something in mind, so less than 2 weeks after getting back from MN, we headed to WI.

The next God thing that happened was just as crazy. While we were in with Dr. Chelimsky, we found out that their clinic doesn't schedule patients with doctors until they have had autonomic testing in their lab. I hadn't done ANY of that. I had a tilt table test (TTT) about 4 years ago, but no testing at all in their lab. That I was even able to schedule an appointment with ANY doctor there was definitely a God thing because that was completely out of line with their procedures.

Because of that, Dr. Chelimsky decided to see if I would be able to get any testing done since I was already there, and he didn't want to make me travel again if we could avoid it. Turns out the testing lab just HAPPENED to have a cancellation right when my appointment with Dr. Chelimsky was finishing. I was able to go right over to the lab and get complete autonomic testing done...REALLY?!?! When does that EVER happen at a major research facility??? It takes MONTHS to get in for testing and to see these doctors and I was able to see the doctor I wanted without the required testing and get impromptu autonomic testing...how is that NOT a God thing?? I even told the nurse who was hooking up all the testing that and she agreed! =)

The appointment and testing went well. Dr. Chelimsky was great and personable. He had already gone over the records that had been sent ahead, and had specific questions and assessments that he did in his office before sending me over for testing. Based on some of those questions and my performance on the assessment tasks, he said he felt that I may have an acquired mitochondrial issue. He is doing some genetic testing and vitamin testing that I think may shed some light on that, and he wants me to try a "mito cocktail" of supplements to see if I see improvement on those.

The autonomic testing was a bit rough...I think it would be interesting to see how a "normal" person reacts to these tests...I was EXHAUSTED and COMPLETELY wiped after the testing which consisted of the very intense lying on a bed and breathing! haha, oh well...I had the Deep Breathing Test, Valsalva, QSART, and 5 minute TTT. The Deep Breathing Test is exactly what is sounds like. I had to breathe in and out in time with a metronome for 10 breaths. About halfway through I was starting to struggle but did manage to complete both trials. The Valsalva is where things got interesting. I had to breathe out as hard and long as I could against resistance and reach a certain exhaling force for heart rate and blood pressure variability assessments. I did okay on the first trial, but almost passed out on the second trial and the results showed my BP and HR bottom out right about when I started to black out.

The QSART was the easiest of the 4 tests because I didn't have to do anything. No breathing required! Well, I supposed I was breathing during the test, but they point was NOT to make me pass out like some of the other tests. This test was assessing my peripheral nerve response to an electric stimulus to see if I had any nerve damage. This test was also normal which was good! This confirmed that I do NOT have any form of neuropathy and my autonomic dysfunction is a central issue. Even though that sounds kinda bad, it's actually good that it's a central issue and not peripheral.

The last test was the 5 minute tilt table test. This test is pretty simple but absolutely HORRIBLE. Haha...this was the second TTT that I've had and it was definitely worse than the first one. After 10 minutes of baseline measurements, the table that I was lying on was tilted to almost vertical, so I was placed in as close to a standing position as possible. I was not allowed to move or do anything other than report my symptoms or answer the doctor's questions. It was only 5 minutes because we did not have a lot of time, but that seemed to be enough time to generate a good amount of symptoms. In a "normal" person, the heart rate should increase and blood pressure will probably drop slightly, but the body is able to compensate and within the first minute, vitals will re-stabilize to close to baseline measures. I didn't do that...my blood pressure was all over the map, high then low then high again, and my heart rate almost doubled and stayed elevated. I felt HORRIBLE for the entire 5 minutes and for a good bit after they lay me back down. It took me another 10 minutes or so to recover from being vertical.

So what does this all mean? Well, like I mentioned earlier, we were able to rule out any peripheral issues contributing to my autonomic dysfunction. So that is an answer to prayer! No neuropathy to deal with and we at least know my issues are centrally related. The Valslava confirmed that I do have what's called Reflex Syncope in the neurology world (Neurocardiogenic Syncope to cardiogolgists) which we had known since my previous TTT in 2010. There is still a bit of a gray area regarding the TTT because typically this test is at least 10 minutes. Based on my vitals, I have Postural Orthostatic Tachycardia Syndrome (aka POTS) but we're not sure if it counts since it was so short. The fact that my blood pressure was all over the map also indicates autonomic dysfunction, so we are pursuing treatments for that.

I'll be doing a comprehensive update in another day or two, so I don't want to spend a ton of time on that right now, but just to say that this trip was well worth the 16 hour drive, battling the snow, and not getting back home until 2 am. I would highly recommend seeing Dr. Chelimsky. He knows his stuff and looks at the whole picture and not just his specialty. Even though he is a neurologist, he asked about my GI issues and skin issues and allergies and asthma. He spent the time to look at me holistically as a unique person and not just another patient coming to his lab.

But more than I was impressed by Dr. Chelimsky and his lab staff, I am so much in awe of how God has been working in these situations. The circumstances around this trip were so completely mind blowing that there is not other explanation than God was opening doors for us to walk through. We are hopeful that in another few weeks to months we will have some definitive answers and can begin actual treatments instead of just guessing what *may* help.

Thank you so much for your prayers and please continue praying! God is definitely in the midst of our trials and making himself known and giving us encouragement along the way.